Providing relief and support to help children with devastating medically complex, neurological conditions and their families in the St. Louis area and beyond.

Here’s what we’ve been up to…

Impact
Annual Lectureship at St. Louis Children’s Hospital
Each year we look forward to hosting a guest speaker at St. Louis Children’s Hospital to educate doctors on ways they can best support children with complex neurological conditions and their families. This year’s lectureship included a trio of speakers associated with the Undiagnosed Disease Network: Dr. Meghan Halley, Dr. Jennifer Wambach and Michelle Herndon. Through the informative presentation and engaging conversations, health care providers learned about clinical research focused on caring for undiagnosed patients as well as valuable family perspectives.

Meet Jack!
Last month, we featured the handsome Jack! Since age two, he has been affected by a complex neurological condition that he courageously lives with each day. Through JJMF’s financial assistance program, Jack was able to receive funding towards his NAPA intensive therapy sessions.

Bookmarked
The Women by Kristin Hannah
Recommended by Kelsie Guerriero, JJMF’s Programs and Development Coordinator, is a great summer read: The Women by Kristin Hannah. The author’s latest work of historical fiction honors the brave and heroic nurses who served in the Vietnam War. Kelsie shared, “As I turned the last page, I couldn’t help but draw some parallels to our JJMF community. Camaraderie, friendship, and love grows from shared experiences–in this book’s case: military service and reentry, and in the JJMF space–caring for a child with a medically complex neurologic condition.

Community Support
JJMF Youth Board Pickleball Tournament
We had an absolute blast at the JJMF Youth Board’s Pickleball Tournament! Thank you to everyone who came out and played, cheered teams on and purchased raffle tickets–your contribution to our mission is greatly appreciated. Also, special thanks to our fabulous Youth Board for making this event come to fruition and hosting such an exciting afternoon of pickleball play!

GiveSTL Day
We are so grateful for the incredible support received during our Give STL Day campaign to raise vital funding for our programs that make an impact in the daily lives of children with complex neurological conditions and their families. Thank you to all of our donors who contributed for Give STL Day, and a special thank you to our corporate partner, Helitech. Together, we raised $18,851 to sustain JJMF’s programs.

On the Blog
A Glimpse Into JJMF’s Month of June Celebration
Last month on the blog, JJMF’s Programs and Development Manager, Becky Belanger shared all the details about planning our upcoming Month of June celebration. Each year, we honor June Jessee’s life and lasting legacy by showering our community of families with support and connection during this especially meaningful month. This is a time the JJMF team looks forward to every year.

Building Awareness
National Nurses Week
In honor of National Nurses Week, we took the opportunity to express our sincere gratitude to all of the astounding nurses who tirelessly serve families on their complex medical journeys. Their dedication, compassion and advocacy for patients does not go unnoticed and many times is a lifeline for caregivers in the trenches.

National Mobility Awareness Month
According to an article published by the University of California – Disability Statistics Center, more than 6.8 million people in the U.S. utilize some sort of assistive device to aid in their mobility. For National Mobility Awareness Month, we highlighted some of the different types of mobility devices available in celebration of the current innovations and mobility solutions.

Mental Health Awareness Month
Caregivers in St. Louis Children’s Hospital units were interviewed and 52% reported moderate to severe anxiety and/or depression. For Mental Health Awareness Month, we wanted to bring attention to the critical importance of mental health, especially amongst caregivers of children with medically complex conditions. Stay tuned! Later this summer, we will be offering a screening of the documentary Unseen: How We’re Failing Parent Caregivers & Why It Matters.